Abstract
Objective
The benefits of palliative care (PC) education are recognized, but the effects of physicians’ attitudes, values and growing experience on end-of-life (EOL) decision-making remain unclear. This study aimed to evaluate whether graduating medical students’ EOL decision-making regarding an advanced dementia patient with critical gastrointestinal (GI) bleeding has changed after 6 years’ working experience.
Methods
A questionnaire presenting a case scenario of a patient with advanced dementia and critical GI bleeding, together with additional questions on attitudes and background factors, was offered to all Finnish final-year medical students in 2015 (n = 639). Respondents were asked to choose between PC and active life-prolonging procedures. The same questionnaire was sent to the previous respondents (n = 402) at the end of 2021.
Results
The proportion of the respondents (n = 227) choosing PC for a dementia patient increased from 37% (n = 84) in 2015 to 50% (n = 114) in 2021 (P = .002). During the study, 60 respondents changed their option from active care (AC) to PC and 30 from PC to AC. However, attitudes behind the decisions remained largely unchanged. The respondents choosing PC prioritized patient benefit and ethics, while those choosing AC regarded physician's legal protection as more influential.
Conclusion
Physicians were more likely to choose PC for an advanced dementia patient after 6 years of clinical experience, though decision-making still varied. The attitudes influencing these decisions may primarily have developed during medical school. The findings underscore the importance of education on PC and ethical aspects of the EOL decision-making in dementia in all levels of medical training.
Introduction
With the aging population and the rising prevalence of chronic illnesses, it is increasingly important for physicians to possess knowledge and skills in palliative care (PC). 1 Given the specific PC needs of older adults, an enhanced understanding of incurable, non-malignant diseases such as dementia is necessary.
One of the major health concerns among older people nowadays is dementia, affecting over 55 million people and ranking as the seventh leading cause of death worldwide. 2 The clinical course of advanced dementia is unpredictable, 3 and its poor prognosis is often unrecognized by healthcare professionals, leading to significant variability in end-of-life (EOL) decisions.4,5 Studies reveal that patients with advanced dementia or other incurable, chronic conditions are referred to PC less frequently and later than those with advanced cancer. 6 Consequently, these patients often undergo repeated hospitalizations and invasive procedures at the expense of quality of life and good symptomatic care.7–9 Advance care planning should be initiated early enough for dementia patients.10–12 Nevertheless, EOL decisions are frequently made when patients have reached the advanced stage of dementia, characterized by severe decline in cognition and communication, rendering them unable to express their own preferences.10–13 Given the global burden of dementia, there is an urgent need to increase understanding of PC needs of patients with advanced dementia among health care professionals.
Many physician-related factors, including medical specialty, personal values, attitudes and training in palliative medicine, significantly influence physicians’ awareness of implementing PC for a patient with an advanced, incurable disease.14–17 This leads not only to great variability in EOL care for individual patients but also to a higher risk of futile treatments and increasing costs in medical care.
Physicians’ age and clinical experience seem to be confounding factors in EOL decision-making.14,15,18,19 Younger physicians often report feeling unprepared for EOL discussions, struggle with the dilemma of making ‘a right or wrong decision’, and fear criticism for their EOL decision.17,19 However, some studies suggest that younger physicians may engage in EOL discussions with patients and families more frequently than their older colleagues do.14,20 This may be attributable to increased education in PC at medical schools, 21 although, in general, clinical experience in caring for patients with incurable diseases as a physician further enhances PC competence. 22
Beyond physician-related factors, other circumstances also affect physicians’ EOL decision-making. 19 The decisions must often be made in acute care settings with limited information about the patient's medical history or wishes.19,23 Due to population ageing, the number of older, frail patients with many comorbidities has substantially grown, and this has increased the need for decision-making also in emergency rooms and acute hospital wards.24–27 Advances in therapeutic options have further complicated these decisions, sometimes leading to unequal EOL care for critically ill patients. 28 Understanding the factors influencing physicians’ decision-making and incorporating this knowledge into medical education is essential. Insights into physicians’ values, attitudes and changes in EOL decision-making during training are crucial for improving medical education and future care. The transition from a medical student to a physician is a significant shift in a young doctor's career as newly graduated physicians have to make treatment decisions for their patients. Therefore, graduating physicians should have adopted basic principles in decision-making in EOL situations at medical school, and understanding whether clinical experience changes physicians’ decision-making is important in planning postgraduate education. However, there is a gap of knowledge on graduating medical students’ EOL decision-making and how this decision-making evolves in subsequent years as physicians.
The aims of our study were to assess how graduating medical students’ EOL decision-making for a patient with advanced dementia changes after 6 years of experience as a physician and what are the elements behind the decision-making.
Methods
Participants
A survey with a questionnaire with seven hypothetical patient scenarios and a cover letter was offered to all Finnish medical students during their last year at medical school in the year 2015 or 2016, depending on the graduation date of each Finnish university with a medical school (Helsinki, Kuopio, Oulu, Tampere or Turku). The questionnaire was delivered to 639 students during a teaching session, and it was returned personally to the teacher or by mail, in a sealed envelope. A total of 402 valid responses were returned (response rate of 63%).
The current addresses of the respondents were enquired from the registry of the Finnish Medical Association, which had the information for 396 former respondents (99%) at the end of 2021, 6 years after their graduation. The research survey with the same questionnaire as used in 2015, was sent to the individual respondents. It also included an envelope for returning the questionnaire, and a cover letter with an introduction to the study and an assurance of anonymity as well as voluntariness. Two reminders were sent to non-respondents.
Valid responses in both study years were obtained from 227 participants (response rate of 57%), which formed this study sample.
Questionnaire
The questionnaire was validated with Finnish physicians in 1999, and since then, it has been used in several studies, mostly concerning cancer cases presented in the questionnaire.15,18,29–32 The questionnaire includes seven hypothetical patient scenarios (six patients with cancer and one with dementia), with several questions regarding factors influencing respondents’ decisions as well as their background, life values and attitudes.
Case Scenario
The patient scenario in this study presented an 82-year-old man suffering from progressive dementia. He had been diagnosed with Alzheimer's disease 3 years earlier. He was brought to the emergency department at 2 am with life-threatening gastrointestinal (GI) bleeding. He lived in a nursing home, had urinary and faecal incontinence, needed help washing and dressing, and could not identify his daughter. His blood pressure was 70/40 mm Hg, and his heart rate was 120 beats/min. The patient could not communicate, and neither his family nor his physician could be reached. The nurse's aide who accompanied him to the emergency department was not familiar with the patient. There was no information available about his wishes or those of his family concerning treatment in this kind of situation. The respondents were asked to choose one of the given treatment decisions: (a) PC, (b) active care (AC), or (c) intensive care. The treatment options were explained as follows: (a) PC: good nursing, sufficient medications for pain and other symptoms, and intravenous hydration only when considered to relieve the patient's symptoms; (b) AC: use of antibiotics, intravenous hydration or blood transfusions aimed at saving the patient's life in a life-threatening condition and (c) intensive care: moving the patient to an intensive care unit. After respondents were asked about the treatment decision, a Likert-type scale was presented to evaluate the influence of different factors (patient's benefit, family's benefit, patient's legal protection, physician's legal protection, ethical values, patient's age, cost of care, and patient's social status) on their decision (from 1 – very little influence to 5 – very much influence).
Statistical Analysis
The answers to the hypothetical patient scenario were re-categorized dichotomously. The three options for the care of the patient in the first question were re-categorized to choosing PC (answer a: palliative) or choosing AC (answers b: active care and c: intensive care). The answers for the second question concerning the significance of different factors with a 5-point Likert-type scale were converted to the following 2-point scale: 1–3 for ‘not much influence’ and 4–5 for ‘much influence’.
McNemar's test was used to compare the dichotomously re-categorized treatment choices in 2015 and 2021 and to compare the proportions of the respondents regarding different values influential behind their decision-making in 2015 and 2021.
The respondents were also re-categorized into four different groups according to the change or maintenance of their choice of treatment approach: (1) PC in both years; (2) AC in 2015, PC in 2021; (3) AC in both years and (4) PC in 2015, AC in 2021. Associations between the change in the treatment choices and respondents’ values behind decision-making or background factors were tested by using the Pearson Chi-Square test. P values of less than .05 were considered statistically significant.
The data analysis was performed using IBM SPSS Statistics for Windows, V.28.0.1.1 (IBM Corp. Armonk, NY, 2020).
Results
The characteristics of the respondents are presented in Table 1. The mean age of the respondents was 33 years in 2021. The majority of the respondents worked in hospitals. Nearly all (n = 223) of the respondents reported their field of medical specialty, which they were either aiming to specialize in (n = 220) or had received a full specialty in. The specialties were grouped into three broader categories: operative medicine (including perioperative medicine), conservative medicine and general practice (including occupational medicine). Approximately half of the physicians reported working in conservative and one out of seven in operative fields of medicine.
Characteristics of the Participants in 2021.
Participants with missing data: sex (2), age (4), field of specialty (4), workplace (2), marital status (2).
In 2015, 37% of the medical students chose PC for the advanced dementia patient, while in 2021 the proportion choosing PC had increased to 50% (P = .002) (Figure 1). The specific changes in respondents’ decision-making are presented in Figure 2. Of the respondents, 26% changed their care option from active to PC and 13% from PC to AC after 6 years of experience as physicians. The respondents choosing AC in both years formed the biggest group in this comparison.
Proportion of respondents choosing palliative care or active/intensive care for the dementia patient in 2015 as a medical student and in 2021 with 6 years' experience as a physician (for one participant, the information was not available).
Proportion of respondents maintaining or changing their treatment decision on the dementia patient from 2015 to 2021 (for one participant, the information was not available).
A summary of factors influencing physicians’ decision-making for dementia patient in the years 2015 and 2021 is shown in Table 2. Patient's benefit and ethical values were regarded as influential factors behind decision-making by most of the respondents in both years. Also, the legal protection of a patient as well as of a physician was regarded as influential by more than 70% of the respondents in both years. Patient's age was regarded as an influential factor by 42% of respondents in 2015% and 38% in 2021. The influence of costs of care was regarded as important by 14% of the respondents in 2015 and by 8% of the respondents in 2021, which was the only significant change between the years (P = .020).
Proportions of the Respondents With Different Factors Having Much Influence on Their Decision Concerning the Dementia Patient.
Factors Having Much Influence on Decision Making and Change or Persistence of the Treatment Choice for the Dementia Patient Between the Years 2015 and 2021.
Table 4 presents associations of the respondents’ background factors and their decision-making. Overall, physicians working in operative fields or hospital settings were most willing to choose the AC option. However, none of the background factors were found to have a significant association with the chosen treatment approaches.
Background Factors and Change or Persistence of the Treatment Choice for the Dementia Patient Between the Years 2015 and 2021.
Discussion
In our study, physicians’ willingness to choose a PC approach for a patient with advanced dementia increased during the 6 years after their graduation. The attitudes behind this decision-making remained quite constant during the first 6 years as a physician. Patient's benefit was regarded as important in the decision-making by most of the respondents, while the respondents favouring PC emphasized ethical values and the ones choosing AC approach, physician's legal protection.
The patient scenario chosen for our study was multidimensional, and in real life, there are possibilities to integrate treatment elements of AC and PC simultaneously. Even though we didn’t preselect any right or wrong choices, we suggest that since the patient represented typical features of advanced dementia, 33 he could have benefitted most from the PC approach.
Previous studies have shown that as medical students and physicians gain knowledge and experience in palliative medicine, their understanding of EOL issues deepens.34–37 However, changes in decision-making practices remain less studied. To our knowledge, this is the first longitudinal study assessing how medical students’ EOL decision-making evolves after graduation.
Our findings reveal that the proportion of young physicians choosing the PC approach for the advanced dementia patient increased from 37% to 50% after 6 years of experience as a physician. Some of the previous studies show that undergraduate medical students often feel unprepared for EOL decisions.32,38–40 Thus, it is understandable that increased clinical experience significantly contributed to the shift towards symptom-centred care in our study. Nonetheless, our study cohort nearly split in half between those choosing AC and those opting for PC, underscoring the inherent complexity of EOL decision-making even after years of medical training. Interestingly, in our previous study concerning decision-making in the same hypothetical case scenario, physicians chose PC approach less frequently in 2015 than in 1999. 41 Although the trend over time was opposite to that observed in our present study, the time frame was earlier and the study involved two different cohorts of physicians. However, approximately half of the respondents both in the present study in 2021 and in the previous study in 2015, chose PC approach, highlighting ambiguity among physicians. 41
In addition to the increasing professional experience, changes in the decision-making towards PC approach in our study might have been influenced by the general approach to the patients with advanced dementia during the study period, as well as personal factors of the responders. Today, patients with advanced dementia are most often cared for in long-term facilities rather than hospitals in Finland, while hospice care and specialized PC are seldom used for dementia patients.42,43 However, PC consultations should be available also in long-term facilities, and advanced care planning is currently recommended for patients with dementia. Finally, respondents’ personal experiences with dementia and their cultural background may also shape respondents’ attitudes regarding EOL decision-making for patients with advanced dementia, which should be considered in future surveys.
The patient in our scenario was suffering from advanced Alzheimer's disease and a life-threatening, but potentially treatable, GI bleeding. Even though awareness of advanced dementia as a terminal condition has increased, decision-making for an individual patient in acute care settings is challenging, particularly for professionals not working with dementia patients.44,45 Thus, unsurprisingly, the physician's specialty is found to affect EOL decision-making for patients with advanced dementia. 46 In our study, physicians specializing in operative fields were most eager to choose an AC approach for the patient, which is in line with earlier observations of surgeons being less likely to refer their patients to PC than physicians within other specialties.46–49 Surgeons may also be more aware of minimally invasive diagnostic and management strategies for GI bleeding, 50 but less familiar with PC.20,51 The growing need for palliative medicine education for physicians working in surgical fields has been recognized widely and the benefits of PC education included in surgical training are shown to be evident.52,53
Goal-concordant discussions and advance care planning would ideally take place while the patient is able to express his/her own wishes and at least before acute events.49,54,55 It has been estimated that the median survival of an advanced dementia patient is slightly over 1 year, but there is still no consensus on the time point when PC should be adopted for a patient with advanced dementia.4,5,56 Therefore, our patient case illustrates a relatively common situation where EOL treatment decisions have to be made in acute care with limited information about the patient's prior health status and goals of EOL care. 23 While EOL planning should ideally occur in outpatient settings, emergency care providers also need skills in EOL discussions and PC. 57 In a survey study from Israel, also using a questionnaire with hypothetical case scenarios of dementia patients in emergency settings, most of the health care professionals had positive perceptions regarding PC, which is in line with our results. However, despite favourable attitudes on PC for patients with advanced dementia, many barriers, like legal concerns or fear of senior-level criticism, were still found to hinder professionals from making PC decisions for the patients, and some of the respondents even chose treatments like mechanical ventilation or endoscopy for the patients. 49 In a further study of the same study sample, 58 cognitive biases –defined as decision-making influenced by thinking patterns and judgements that deviate from rational thinking processes – were also identified to influence the treatment decisions of the respondents. Taking into account both our results and previous studies, integrating education on PC and EOL decision-making into clinical practice within acute care settings is essential.
In this sample of Finnish physicians, the attitudes and ethical factors influencing decision-making remained largely consistent over the 6 years following graduation. Patient benefit and ethical values were consistently seen as the most important factors behind decision-making. However, our findings indicate that physicians’ perspectives on what is best for the patient can vary between individuals and evolve over time.
Research indicates that medical students’ idealism regarding patient centredness to some degree declines during their clinical training years.59,60 Nevertheless, we assume that values and attitudes towards EOL care are adopted throughout the pre-graduate education and remain relatively stable in subsequent years. This observation, consistent with previous studies,34,61 underscores the importance of incorporating these considerations into undergraduate curricula while ensuring that the complex ethical dimensions of EOL decision-making are also addressed during clinical training across specialties.
In our study, respondents choosing AC placed greater importance on physician's legal protection compared to those favouring a PC approach. This aligns with previous findings that legal concerns often lead to more complex diagnostic testing and treatments.62,63 Finnish law requires mutual understanding in patient care, and if a patient is incompetent, their representative must be consulted to align care with the patient's wishes. 64 In our scenario, as in many real-life cases, neither the patient nor his representative could be consulted about the treatment options. This may make AC appear to be the legally ‘safer’ option for our patient or, perhaps, for the physician. Physicians may also delay decisions until the patient's family or own physician can be involved in care discussions. However, providing effective EOL care in acute settings requires a clear understanding of the benefits and harms of various treatments for frail patients with advanced, incurable diseases.
Finally, a few important limitations need to be discussed. First, the sample size is relatively small (n = 227), and the response rate (57%) with possible non-response bias may limit the generalizability of the results. Second, physicians’ responses to hypothetical patient scenarios may differ from the decisions in clinical practice. However, we assume that the answers do reflect the decisions in real life. Thirdly, with a questionnaire, there is always a risk of misinterpretation. 65 The major strength of our study is that the questionnaire was sent to the same group of medical students after 6 years of experience as a physician. This gives us a unique opportunity to evaluate the change in the EOL decisions of young physicians as well as the factors and values behind their EOL decision-making.
Conclusion
Young physicians’ willingness to choose a PC approach for a patient with advanced dementia increased within 6 years post-graduation. The attitudes behind decision-making, such as patient's benefit and ethical considerations, remained largely consistent and are likely formed early in medical training. Patient's benefit and ethical values were especially influential for those favouring PC, while physician's legal protection was a more influential factor for those shifting to AC in 2021.
This study underscores the complexity of EOL decision-making in advanced dementia and highlights the need for comprehensive education on PC and dementia prognostication for medical students and residents. Such education should address not only medical knowledge but also ethics and legal considerations, empowering physicians to confidently consider PC as a treatment option when appropriate.
Footnotes
Abbreviations
ORCID iDs
Ethical Approval and Informed Consent Statements
This study was approved by the Regional Ethics Committee of Tampere University Hospital, Finland (R15101) and participation was anonymous and voluntary.
Funding
The authors disclosed receipt of the following financial support for the research, authorship and/or publication of this article: This study was funded by the Seppo Nieminen Legacy Fund, the Signe and Ane Gyllenberg foundation, the Finnish Medical Association and the Cancer Society of Pirkanmaa. The funders did not have any role in the design of the study; in the collection, analysis or interpretation of the data or in the writing of the manuscript.
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.
Data Availability Statement
The datasets used and analyzed during the study are available from the corresponding author on reasonable request.